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When your back starts aching, you might immediately think of the usual culprits—picking up that 50-pound bag of dog food, working from the sofa most days instead of an ergonomic desk chair—but there’s something else that could be to blame: axial spondyloarthritis (AxSpA). The symptoms of this inflammatory disease—including lower back pain—can all be easily attributed to something else or written off as just “weird body things.” The result: People who have it often don’t get a diagnosis or start treatment for up to seven years—or longer. Here are the telltale signs to look for.
What even is axial spondyloarthritis?
Like other forms of arthritis, AxSpA is characterized by joint inflammation. But it impacts particular parts of the body, specifically the spine and the sacroiliac joint, which is where the backbone and the pelvis meet. Generally, AxSpA causes symptoms like back pain and fatigue, but it can also affect joints in the extremities (like hands and feet) and the ends of tendons, which connect muscle to bone, says Abhijeet Danve, MD, associate professor of medicine and director of the Yale Spondyloarthritis Program at Yale School of Medicine in New Haven, Connecticut. The eyes, skin, and stomach can also be impacted.
If those body parts seem somewhat unconnected, they are. We don’t know why AxSpA preferentially affects parts of the body beyond the back and pelvis, but Dr. Danve notes that it may have something to do with genes and site-specific inflammation.
Most overlooked symptoms
One out of every 200 people in the US likely have AxSpA, but they may not realize it because of how easy it is to miss some of the symptoms. Here are five to look out for:
This is the number one symptom of the condition, but it’s also something that’s incredibly common—an aching lower back happens to almost everyone at some point in their lives and impacts one out of five people at any given time. As a result, it’s easy to miss it as a sign of AxSpA—even if you go to the doctor for it. “You may go to a primary care provider, physical therapist, or chiropractor, but unless the provider thinks about AxSpA and asks the right questions, the diagnosis will be missed,” Dr. Danve says.
Something that may help you realize your back pain could be caused by AxSpA: It’s different than the kind you’d feel if you lifted something wrong and injured yourself. “It’s gradual in onset, typically starts before age 45, gets worse with prolonged rest so it can wake you up from sleep, and gets much better with activities,” Dr. Danve says.
AxSpA can bring on plantar fasciitis, which is when inflammation in the heel causes the sole of your foot to hurt. You may also have pain around your Achilles tendon. “These are things that happen to everyone, and we blame it on bad shoes or being too active, but they can be symptoms of AxSpA,” says Dr. Danve.
There are a lot of things that will likely run through your mind if you feel pain in your chest, and AxSpA probably isn’t one of them. But it could be what’s causing your discomfort. “Your rib cage has a lot of tendons, so it can get inflamed and result in chest pain,” Dr. Danve explains. While it’s important to seek emergency care if you feel chest pain and are concerned it’s a heart attack, keep in mind that AxSpA could be the issue if your tests come back normal and the pain is affecting your rib cage rather than the heart. “Rib cage pain is typically muscular, where it hurts to touch your ribs or stretch,” Dr. Danve says. “Heart pain usually comes on with exertion, radiates out to your arm or neck, and is associated with nausea and sweating.”
Related: 5 Reasons Your Chest Hurts That Have Nothing to Do With Your Heart
Around 10% of people with AxSpA also have the inflammatory skin condition psoriasis. In addition to impacting areas like your elbows and knees, this can lead to plaque on your scalp. “This is typically blamed on dandruff or seborrheic dermatitis,” Dr. Danve says. “And it may get worse with stress or sleep deprivation.”
Known as anterior uveitis, this condition happens in up to 30% of people with AxSpA. “All of a sudden, one eye becomes painful, teary, and light-sensitive, then it goes away in three to five days,” Dr. Danve says. “You may not really put two and two together with the back pain and the red eye,” and without that link you may not mention the eye issue to your doctor, missing the chance for an AxSpA diagnosis.
Between 5 and 10% of AxSpA patients also have inflammatory bowel disease (IBD), while up to half of people with AxSpA report gastrointestinal issues like pain and diarrhea. IBD, which is caused by high levels of inflammation in the intestines, can lead to symptoms like abdominal pain, diarrhea, urgently needing to poop, and rectal bleeding.
Related: IBS vs. IBD: What’s the Difference?
Think you might have AxSpA?
The unfortunate reality is that because AxSpA symptoms are so easily overlooked, it takes the average person five to seven years to get the right diagnosis. That is a long time to be in pain. Another barrier to figuring out what’s going on is that a lot depends on the provider you see—your doctor will need to realize what’s going on to diagnose it correctly. “They need to put all the information together, process [it], and make a judgment,” Dr. Danve says.
AxSpA doesn’t necessarily show up on an X-ray or MRI of the spine, and while there is a blood test your doctor could do to look for an elevated inflammation marker called C-reactive protein, it’s only present in about half of cases. “You are the best advocate for yourself,” Dr. Danve says. His recommendation: If you have lower back pain that matches the description above and any other possibly connected symptoms, don’t go to your primary care physician. Instead, call up a rheumatologist and say you think you have AxSpA. “They will immediately take you in.”
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